PBC diagnosis and liver biopsy

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I have had fluctuating ALT, AST and ALP for a little over a year.  Slightly high, then ALT up to 300.  Down to slightly high then normal.  The they went up to 600 with an ALP of 900 but were down in 24 hours.  My AMA was 35over a year ago and now it is 37.5.  No one bothered to tell me.  Now they want a liver biopsy and are still hesitant to diagnose PBC.

I went to the hospital 3 months ago with consfusion and that was when my LFT were sky high.  The ER Dr told me he thought I had been drinking heavily.  That upset me and I left.  I had a liver ultrasound which was "unremarkable" which was odd because last year I had mild fatty liver.  I have hypothyroidism, IBS, Type 1 Diabetes, Alopecia Areata, Raynaud's Dyndrome (mild), and fibromyalgia.  I have been exceptionally fatigued and itching and in pain but that has always been blamed on these other disorders.

My GI want me to have a liver biopsy which I really don't want.  I have been in enough pain as it is.  I have a cervical fusion C4-7 that hurts all of the time.

Anyone have a biopsy?  

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  • Posted

    I'm not a medical professional, but I've had a lot of liver problems that ended up with a transplant. Was in a medical coma and it was either a transplant or they wouldnt wake me from coma...end of.

    Yes, I've had a biopsy and whilst it was a bit uncomfortable it wasn't rip roaring painful. My personal advice (given the possible consequences and long term suffering of not getting a proper diagnosis) it to have it done. It's not going to kill you and the pain is not excruciating, neither will any pain be for long.

    You'll get a heavy local anaesthetic.

    Basically it is a small price to pay given what might happen if they don't find the right diagnosis.

    If it's PBC, there's a drug called colestyramine (think the US brand name might be domestic...can't remember, but try googling colestyramine and itching). It helps with bile acid which could be the cause of your itching. Again, I'm not a medical professional so check with your doc before taking anything.

    Hope this helps, but get it done or you could be suffering with long term damage. I wouldn't wish what happened to me on my worst enemy.

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  • Posted

    Sorry, auto correct messed up. The US brand name was COLESTID, not "domestic"!!!

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    • Posted

      Thanks. After reading about the biopsy I was afraid it would hurt and I would be in pain for a week and unable to do anything.  I asked my liver specialist if my arm and body aches were possibly related and he said no.  In fact he won't diagnose me without the biopsy so I guess I will have to have it.  I'm sort of upset that they didn't tell me anything about what to expect during the biopsy nor have they talked to me about pbc other than it's a possibility  I cancelled my biopsy appointment because I was not mentally prepared for it.  I take narcotics and I think I will need an increase for the post procedure pain so I am going to get an appointment with my pain Dr. first.  If anyone has had a biopsy I would appreciate any advise.  The stuff I read on the internet says you can't to anything physical and you might hurt for a week.

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    • Posted

      I was on Oxycodone at the time so they didnt give me anything else. I could only feel it until the next morning and wasn't so much pain, but more of a dull ache. Not that bad at all. But we all feel things differently.

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  • Posted

    Hi Robin l have lupus sjogrens and Raynards im 67 years old. My lfts have been raised for 2 years but not as high as yours my gp zent me to see a gastrologist. I had ct scan with dye and ultra sound which showed fatty liver she was concerned about my lfts and arranged for me to have a liver biopsy which l had in December it wasnt pleasant but over and done with very quickly. Im so glad l had the biopsy as it showed that l had pbc slight scaring and slight fibrosis. I am taking URSO meds and so far my lfts are coming down. If l hadnt of had biopsy l might now have had cirrosis and at my age no chance of a transplant. As you have other autoimmune diseases like me chances are you may have pbc if you have one autoimmune disease others follow. Good luck.
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  • Posted

    Hang in there.
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